This post is written and originally posted on Heart Savvy Momma. Heart Savvy Momma was created by Erica Thayer, co-founder of Project Heart.
Hey new momma, welcome to the sorority that no one wanted to pledge. I’m sure hearing the news that your child has a heart defect hit you like a punch to the gut. Right now you are grieving and that’s ok. The dream of your sweet baby having a normal childhood has seemingly shattered at your feet. Your pinterest board of nursery decor has now been overshadowed by packing for a possible extended NICU stay. It’s hard to wrap your mind around for a while. But, now that you are here, I think you’ll find that this group of moms is like no other. This community is one of support, encouragement, and hope.
First of all, stop blaming yourself. It’s not your fault. About 85-90% of heart defects have no known cause or origin. That means that drink you had before you knew you were pregnant did not cause this. It means what ever you ate, or didn’t eat, did not cause your baby’s heart defect. In most cases, no matter what you did or didn’t do, it doesn’t matter. CHD has no rhyme or reason. It affects over 40,000 babies every year in the US, and for some reason yours is one. So is mine.
When my OB first referred me to a MFM specialist we were terrified. We knew something was wrong with our baby’s heart but we didn’t know to what extent. I was overly hopeful that maybe we just didn’t get clear pictures the first time. About 5 seconds after the ultrasound tech pressed the probe to my belly the doctor leaning over her shoulder let out a low whistle. “Wow. Oh wow. There’s so much going on here I don’t even know where to start.” Not exactly the words I was hoping to hear about my baby’s heart defect.
The appointment ended with the specialist telling us our son’s heart defects were incompatible with life. To my shock, he offered to terminate the pregnancy. I declined and left with the referral to pediatric cardiologist in my shaking hand. For the rest of the day I was either crying or blankly staring at nothing in silence.
For me, pregnancy was the hardest part. The next four months were full of so many unknowns. As he grew, his initial diagnosis slightly changed and so did his surgery plan. But guys, once he was born I knew this kid was a fighter. We fumbled our way through the first days in the NICU and I did what no mother should have to do. I handed my newborn over to the surgery team for his Norwood Procedure.
Guys, he rocked it! He recovered incredibly fast from what is considered a very major heart surgery at just 7 days old. Now, Calvin is 4 years old with 3 heart surgeries under his belt. To be honest, the first year was hard, but there is so much hope. He is THRIVING. We spent countless nights in the hospital but you would never know he has a heart defect. He goes to preschool and looks like any other kid.
Starting out is the hardest part. But remember, there is a whole community of moms who have gone before you on this very road. They aren’t just sympathetic towards your situation – they have been right where you are standing and they get it. Follow the Heart Savvy Momma Facebook and Instagram pages for weekly encouragement and resources on your journey. Join in on the conversation on the Heart Savvy Momma Community page to connect with other moms going through your same struggles.